Choice of living arrangements.

BACKGROUND: The rights to choose where and with whom to live are widely endorsed but commonly denied to adults with intellectual disabilities (ID). The current study provides a contemporary benchmark on the degree of choice exercised by adult service users in the USA. METHOD: Data came from the National Core Indicators programme. Participants were 6778 adult service users living in non-family-home service settings in 26 US states. RESULTS: Most adults with ID did not participate in choosing where and with whom to live. Those with more support needs because of more severe ID and/or co-occurring conditions experienced less choice regarding living arrangements. Individuals living in their own home or an agency-operated apartment were more likely to choose where and with whom to live than individuals in nursing homes, institutions or group homes. However, few individuals with severe or profound ID chose where and with whom to live regardless of where they lived. CONCLUSIONS: In 2008, despite community-living policies that emphasise choice, many adult service users with ID in the USA experienced little or no choice about where and with whom to live, especially those individuals with more severe ID. Our findings provide a clear endorsement of policies promoting more individualised living settings, such as one's own home or an agency apartment, because these settings do provide substantially more choice about living arrangements.

Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 National Health Interview Survey Disability Supplements.

In 1994 and 1995, the National Health Interview Survey included a Disability Supplement (NHIS-D) to collect extensive information about disabilities among individuals sampled as part of annual census-based household interview surveys. Here we describe the development and application of operational definitions of mental retardation and developmental disabilities to items in the NHIS-D to estimate prevalence. In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%). Differences in prevalence estimates for mental retardation and developmental disabilities and among people of various ages are explored.

Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 national health interview survey disability supplements.

In 1994 and 1995, the National Health Interview Survey included a Disability Supplement (NHIS-D) to collect extensive information about disabilities among individuals sampled as part of annual census-based household interview surveys. Here we describe the development and application of operational definitions of mental retardation and developmental disabilities to items in the NHIS-D to estimate prevalence. In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%). Differences in prevalence estimates for mental retardation and developmental disabilities and among people of various ages are explored.

Interventions for challenging behavior in residential settings.

Predictors of interventions for challenging behavior by residential service providers were examined. Three forms of intervention investigated were (a) Individualized Habilitation Plan (IHP) objectives concerning challenging behavior, (b) one-to-one crisis intervention in the preceding 30 days, and (c) services from behavior management professionals in the preceding 6 months. Findings across these three interventions were largely consistent. Externalized challenging behavior (outwardly directed aggressive or disruptive behavior aimed at other people or objects) was consistently associated with all interventions. The implications of these findings for service providers and service users are discussed.

Longitudinal study of recruitment and retention in small community homes supporting persons with developmental disabilities.

Variables associated with turnover in 110 small Minnesota group homes supporting people with developmental disabilities between December 1993 and December 1996 were examined. Common staffing problems included recruiting qualified workers (reported by 57% of supervisors) and staff turnover (44%). Turnover for direct support professionals was 46%. Of workers who left, 45% left within 6 months of hire, and another 23%, between 6 and 12 months. A multiple regression analysis (with 11 variables) accounted for 34% of the variability in facility turnover rates. Variables contributing significantly to the prediction of higher turnover included greater support needs of residents, lower starting pay, less tenured supervisors, and fewer direct support professionals eligible for paid leave. Implications for practice, research, and policy were discussed.

Effectiveness and quality of individual planning in residential settings: an analysis of outcomes.

Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.

Effectiveness of challenging behavior IHP objectives in residential settings: a longitudinal study.

Effectiveness of challenging behavior Individualized Habilitation Plan (IHP) objectives in residential settings was examined. We evaluated three indicators of successful intervention: discontinuation of challenging behavior IHP objectives, change in challenging behavior over time, and frequency of one-to-one crisis intervention and found little evidence of effective intervention. Less than a fourth of participants had a challenging behavior objective discontinued within a year. There was no significant change in challenging behavior from one annual assessment to the next, although the decrease in asocial challenging behavior approached significance. Frequency of crisis intervention also did not change significantly over time. These findings suggest that most challenging behavior IHP objectives are ineffective in reducing challenging behavior.

Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities.

Expenditures, staffing, and outcomes were examined for 116 adults with severe or profound mental retardation who moved from state institutions in Minnesota to various community living settings and a comparison group of 71 persons who remained institutionalized. Outcome variables included community access, social activities, community inclusion, family relationships, and choice. Comparison of participants' personal characteristics revealed no differences between groups, but several differences emerged when the community sample was grouped by residence size or public versus private ownership. Where necessary, covariance analysis was used to adjust for these preexisting differences. Community residences were less costly and had more favorable staffing and uniformly better outcomes than did institutions. Few outcome differences were evident between community residents when compared by residence size or service ownership.

Evaluation of outcomes and cost-effectiveness of a community behavioral support and crisis response demonstration project.

A behavioral support and crisis response demonstration project authorized by the Minnesota Legislature in 1992 was evaluated. We described the demonstration program, its service users, and satisfaction and concerns with the program of service recipients, their families and careproviders, and county case managers. We also provided follow-up data on the outcomes of the first year service users and gave the service outcomes projected by case managers had the program not been established. These projected outcomes were validated by follow-up of a comparison group of persons unable to access the program's services. Cost-effectiveness was computed from costs of establishing and operating the demonstration program and the actual average costs of the services that were projected to otherwise have been used.

State institutions: thirty years of depopulation and closure.

Over the past 30 years, a number of social, political, and economic forces have influenced public policy decisions regarding residential services for persons with mental retardation and other developmental disabilities (MR/DD). One of the most striking outcomes of these forces has been a steady decrease of persons with MR/DD residing in state institutions. In this paper we show the changes over the past 30 years in state institutional populations, interstate variability, movement of individuals into and out of state institutions, costs of state institutional care, and state institution closures as a result of social policy.

Beneficiary centered care in services to persons with developmental disabilities.

This article provides an overview of the findings from the Evaluation of Medicaid's Community Supported Living Arrangements (CSLA) Program. Results suggest that CSLA provided a useful model of beneficiary centered care for persons with developmental disabilities. The implications of the findings of this evaluation for current management of Medicaid programs are discussed.